Support Groups

Luton Parent Carer Forum (PCF) update:

The Luton Parent Carer Forum has now closed and Julie Singleton, Parent Carer Participation Advisor for ‘Contact’ for the East of England and South East and Associate Consultants will be working with Luton to develop a new forum over the coming year.

Due to the current circumstances with Covid 19, much of the development work such as meetings, talking to parents about what they would like from a Forum, and getting involved with it, will have to be/remain online until further notice. Stakeholders will be involved too.

As an interim measure, if parents/ carers live in Luton and their children access services in nearby Local Authority areas, depending on the Forum’s individual policy, they may be able to join those Forums.

If parents or practitioners  have any questions about what our plans are they can contact Julie: [email protected]

Some other useful links to information:

Parents needing individual help can look at our Advice pages https://www.contact.org.uk/advice-and-support/

Here is the link to our parent participation  pages https://www.contact.org.uk/get-involved/parent-carer-participation/

For financial advice https://www.contact.org.uk/advice-and-support/benefits-financial-help/

For things to do with the children while they are at home fun and inspiring ideas and resources to keep children entertained at home

https://www.autismbedfordshire.net

Autism Bedfordshire’s services help break down the barriers to social participation for autistic people and their families, by providing places where they can go and feel comfortable, accepted and not judged by society. With the encouragement and support of specialist trained staff, they help autistic people build their confidence, self-esteem and social skills through taking part in social activities and mixing with other people.  

01234 350704 – 9am to 5pm, Mondays to Fridays (excluding bank holidays).

https://directory.luton.gov.uk/kb5/luton/directory/service.page?id=aJuKzr2uX9Y

The autism spectrum team (part of the Special Educational Needs Service) run the Families in Luton Autism Group (FLAG).

This was formed to address the needs of families affected by autism after an initial survey highlighted the parents’ wishes to link with families in similar circumstances, have access to a sympathetic listening ear and user friendly information about the autism spectrum.

Independent Provider of Special Education Advice (known as IPSEA) is a registered charity (number 327691) operating in England. IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND). We also provide training on the SEND legal framework to parents and carers, professionals and other organisations.

Why families need IPSEA

By law, children with SEND are entitled to educational support that meets their individual needs. Since IPSEA was formed in 1983, we have helped to improve educational support for thousands of children with all kinds of SEND. We do this by providing free and independent legally-based information, advice and casework support.

Our unique range of services has been developed to ensure that families understand their children’s legal rights and entitlements and that they are empowered to enforce those rights to secure the right education for their child.

How IPSEA can help

IPSEA has a suite of free downloadable legal guides and resources available to parents and carers. These guides are complemented by a free Advice Line which provides legally based information and next step advice on any educational issue that is a result of a child’s SEND. IPSEA’s Tribunal Helpline gives next step advice on appeals and disability discrimination claims to the SEND Tribunal and is also the gateway to our Tribunal Support Service where a referral can be made for more extensive casework support from a volunteer, including representation at the hearing. Our advice services are delivered by a national network of around 200 highly-trained volunteers, supervised and supported by IPSEA’s Legal Team members.

IPSEA provides legal training for parents, school staff, parent carer forums, support groups and other organisations in order to increase their knowledge and understanding of the SEN legal framework. The proceeds raised from our training courses helps fund IPSEA’s core services (Advice Line, Tribunal Helpline and Tribunal Support Service).

We also work to challenge unlawful SEND policy and influence policy development at both a local and national level. Our policy work is informed by information and evidence captured through our training and advice services, and has been instrumental in shaping law and policy in the field of special educational needs and disability. 

https://www.ipsea.org.uk/

https://directory.luton.gov.uk/kb5/luton/directory/service.page?id=oWrY5iQZC4s

In partnership with River Bank Primary, The Autism Spectrum Team, from the Special Educational Needs Service (SENS), SWAN run a support group for families affected by autism in the local community.

The group hold half-termly meetings, where carers have the opportunity to speak to professionals, and meet with other carers. Guest speakers are regularly invited to share their expertise.

The group have a mailing list, which we use to inform members of upcoming meetings, and to share information, news and events relating to autism in the local area. If you would like to join the mailing list, please email the team: [email protected]

https://www.familyfund.org.uk/

Family Fund is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people. Last year, they provided 92,585 grants or services worth over £32 million to families across the UK.

They provide grants for a wide range of items, such as washing machines, sensory toys, family breaks, bedding, tablets, furniture, outdoor play equipment, clothing and computers. It can be a struggle financially, emotionally and physically for families raising a disabled or seriously ill child, and these grants help break down many of the barriers families face, improving their quality of life and easing the additional daily pressures.

https://ican.org.uk/

I CAN is the leading charity for children and young people’s speech, language and communication. I CAN has a range of free information about speech, language and communication skills on its Talking Point website. You can also speak to one of I CAN’s speech and language specialists for free advice and guidance by calling 0207 843 2544. 

https://www.challengingbehaviour.org.uk/

The Challenging Behaviour Foundation (CBF) provide free information about challenging behaviour and a wide range of related topics online.
They can also signpost you to other specialist organisations and sources of information. Call the family support service on: 0300 666 0126     

https://www.flyingstartluton.com/

FSCC (Flying Start Children’s Centres) deliver a range of support and services to help children develop and progress by supporting them and their parents.  The FSCC provides opportunities for young children and their families to access the right support locally, at the right time, and at the right level.

For further information, visit the website link above and/or their facebook page: https://www.facebook.com/FSLuton/

You can also call them on 01582 548356 or email them at [email protected]

https://www.undiagnosed.org.uk/

SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. SWAN UK run regular free events to bring families together and provide opportunities to make precious memories. 

Contact Tel: 0300 124 0441 email: [email protected]

https://contact.org.uk/

Contact support families with disabled children. They provide A free helpline where you can talk to one of their parent advisers about any concern or worry you may have about raising a disabled child – 0808 808 3555 – or you can email the team of parent advisers or get in touch with them via their Live Chat service, Facebook or Twitter.

https://www.theboparancharitabletrust.com/

This charity was created with the sole aim of improving young peoples’ lives. They provide funding to children with disabilities, life-limiting illnesses and those who are in extreme poverty across the UK. Their grants can fund specialist equipment not available on the NHS, treatments such as a Speech & Language Therapy, Behavioural Therapy, and household essentials and food vouchers to those in extreme poverty.  To apply visit http://www.theboparancharitabletrust.com/apply

https://www.sense.org.uk

For everyone living with complex disabilities. For everyone who is deaf/blind. Sense is here to help people communicate and experience the world. We believe that no one, no matter how complex their disabilities, should be isolated, left out, or unable to fulfill their potential.

Autism Parent Groups Information

The Autism Spectrum Team, part of the Special Educational Needs Service at Luton Council, run three Autism support groups across Luton.

FLAG – Families Living with Autism Group: [email protected]

https://directory.luton.gov.uk/kb5/luton/directory/service.page?id=aJuKzr2uX9Y

SWAN – Support With Autism Network: [email protected]

https://directory.luton.gov.uk/kb5/luton/directory/service.page?id=oWrY5iQZC4s

DADS – Dads Autism Discuss Support (Specifically for Dads and male carers): [email protected] 

https://www.autism.org.uk/directory/d/d-a-ds-dads-autism-discusssupport

If you would like more information about the team and the Special Educational Needs Service please visit: https://directory.luton.gov.uk/kb5/luton/directory/localoffer.page

Kids in Action is a charity for special needs children with a strong focus on positively transforming young peoples’ lives. From their centre in Dunstable, they run a variety of clubs, as well as daily, weekly and school holiday activities.

The Carers Central service is dedicated to helping unpaid carers living or working in Luton. They run an online support group on a Monday morning between 10.30 -12.00pm.  For more information please contact Levi or Sally on:

– WhatsApp: 07826 366477
– Phone: 01582 470900
– Facebook Messenger: @TheDisabilityResourceCentre
– Email: [email protected]
– Chat now: On their website – just click the ‘chat to us’ box at the bottom of every page. Open 9.00am to 5.00pm, Monday to Friday